Calling all triple negative breast cancer patients in the UK
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Hello Mary,
Thank you for relating your experience with Windows 10. I can understand how you like your PC and I can understand why you are using Windows 7 and went back to it after trouble with Windows 10.
Raymond and I have just a laptop with a 17 inch screen. I really call it Raymond's computer, because I am not that interested in computers. I just do the basics. Raymond thought you might like to know that Windows 7 will not be supported after January 2020, provided you have Service Pack 1 installed.
I am wondering what is going to happen in the next few days as apparently Microsoft is going to perform a major upgrade on our computer according to the messages coming up onto our screen.
The General Election is almost upon us and I have just had a phone call from a cousin of mine in London, in a dilemma about where to cast his vote. We had quite a conversation. I think the population here must be very fed up.
That is all for now. Raymond and I are going to take a break.
Talk soon.
Love.
Sylvia xxxx
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part of an unusually empty St. Mark's Square in Venice; it was raining and chilly at this early time, but got very warm later and very busy0 -
Hi Mary,
During Taxol a lymph node was growing and they biopsies and found it was Her 2 positive.So my tumor is both triple negative and Her 2 positive-Yay!I would love to see more pictures.We are planning a big family cruise in August out of New Jersey to the Caribbean for 9 days.
I also plan on visiting my son and his wife in San Diego in July.I don't finish radiation until June 27th so I hope and pray I am in good shape by the last week of July.So far so good!
Love,
Rhond
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self-explanatory! 0 -
Hi Sylvia,
So far not much fatigue with radiation-U have 3 more weeks to go.Herceptin and Perjeta aren't too bad.A little diarrhea that is easily controllable with Imodium.I read that Xeloda can cause Hand and Foot Syndrome where your skin can peel and become painful.Also Herceptin affects the heart so I am getting an echocardiogram every 3 months.
Rhond
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Hello Everyone,
I am posting some more photographs from around the grounds in our apartment complex. I shall add the names of these later, as I need to go out to do some shopping.
Rhonda and Mary, thank you for your posts. I shall answer later on today.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia
My daughter-in-law is 40, this seems to be a prime age for cancer these days. The way things look now, she will have a double mastectomy and reconstruction. The only fly in the ointment will be if they find anything in her lymph nodes, or if her genetic tests come back positive. The PET scan looked clear for the nodes, so hopefully that is true.
Tell Raymond thanks, I am aware Windows is going to stop support at some point, but I am hoping they will have the bugs out of the newer Windows by then! It's good that he can deal with these things. My PC is rather aged as computers go, I think it came with a different form of Windows, then I upgraded to 7. It does not like 10, 7 is quite smooth on it.
I do know about another terrible terrorist attack in London, that makes 3 in the last 3 weeks, I think? Just horrible. So often the police are aware of these people, I read how one of more of them was on a TV documentary called "The Jihadi Next Door."! I guess they didn't take it seriously?? I suppose they are not allowed to detain them before they commit these heinous acts, I'm not sure how one ever gets out of front of it. Actually, I do know how, but if the police acted pre-emptively they would be accused of all kinds of things, and the police would end up being the criminals! It's a topsy-turvy world, and the politicians with their bodyguards and gated homes tell the rest of us to just live normally and get used to it! Crazy. I also read where customers in one of the pubs that was attacked fought back by throwing bottles and chairs at the perpetrators, which I suppose is better than nothing. It's not good defense against a bomb, however.
I saw the latest Chris Woollams' post, and have so far just skimmed over it. I was interested to see Bentonite listed as a detox and a cure for all kinds of stomach issues. Around here if someone has a farm pond that is leaking, they can put Bentonite in it. It will travel to the leak and seal up around it, thus it is a repair. I had no idea it was for human use, interesting.
I have not called about his Personal Prescriptions, perhaps I am afraid he will tell me I am doing everything all wrong! I will read more of this post later and comment.
I have always heard too, that the cancer is in our bodies in the stem cells, if given a chance by our immune system it can act up again. It's an uncomfortable thought, the enemy within! I try not to give it too much thought, I am only partially successful with that! I think I have become a bit fatalistic about the whole thing.
Hope your weather clears up!
Talk again soon, love,
Mary
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Hey, Rhonda
I'm so glad you are going on a Caribbean cruise in August, and planning a trip to San Diego in July. It makes all the difference to have something pleasant to look forward to. Are you going to do any shopping for your trips? Or do shopping on your trips? I wish I would have done more shopping but didn't want to drag a whole lot of extra weight home.
I'm glad also that the chemo and rads is not being too hard on you. I have heard that before from someone else, that the Xeloda caused their feet to peel and sometimes swell. This did go away when they stopped taking it
Hard to understand why one person would have 2 kinds of BC at the same time, but there is so much I don't understand about all this; it would be nice to get some answers at some point.
Later, love, Mary
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Hello Mary,
Thank you for your post. I agree with you that forty seems to be a prime age for cancer these days. I do hope everything will go smoothly for her. It is a big ordeal to have a double mastectomy and reconstruction. Let us hope that her lymph nodes will be clear and that the genetic testing will come back negative. It is such a lot to be dealing with. Does she have any children?
I do hope everything will go smoothly with your computer. I do wish the technology people would leave everything alone, but it looks as though there is an ongoing battle to deal with hacking and viruses.
It is unbelievable what is going on in our country at the moment. I do not see how it can be resolved because anyone can now run us over or stab us at a moment's notice. This afternoon in East London, yet again, three Muslim women chanting the Koran, came up behind a young white woman and stabbed her in the back and then kicked her on the ground. This is out of hand and the powers-that-be had better get a grip on it soon. We have the enemy in our midst. The recent attack on London Bridge should not have happened. The three men were known and should not have been walking around. We need action, a state of emergency declared and armed soldiers everywhere. Our politicians live in a bubble and blithely tell us not to be alarmed and to carry on.
I have been reading the Chris Woollams email and have found it most interesting. I was interested to read about the difference between cannabis and hemp. I was quite surprised to find containers of CBD in one of the natural food stores here in Exmouth. It was very, very expensive. What do you think about all the benefits it is said to have against cancer and that they have been well researched? I always have doubts about these things and worry about the money-making aspect of everything.
Because of our own TNBC status, I was particularly interested in number 4 Is there any compound that actually works against TNBC and the seven natural bioactive compounds that are supposed to work against it.
I find I have to keep reading the sections over and over again and simplify everything in my mind. To simplify, here is the list of the seven bioactive compounds.
Vitamin D
Indole 3 Carbinol/DIM
We need to eat broccoli and kale amongst other things.
Curcumin
Blueberries – especially blueberry powder and blueberry juice.
Rose Hips – rose hip extract.
Luteolin (LU) – eat carrots, peppers, artichokes, celery, olive oil, parsley, oregano, rosemary, thyme and peppermint.
Red hot chilli peppers.
I have simplified all this but there are a lot of details about what these seven compounds do in the way of dealing with triple negative breast cancer.
That is about all for now. I have a few things to do and then I am going to listen to Nigel Farage on LBC. I have noticed lately that we are getting more and more calls from Americans living in America. Shall I be hearing from you any time soon?
Tomorrow is voting day. I shall be so glad to see the back of it. I suppose they will discussing the result until Christmas!
Take care, Mary, and thank you for more photographs. What did you think of my flowers?
Love.
Sylvia xxxx
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Sylvia,
Your flowers are beautuful!Thank you for posting!
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Hello Rhonda,
Thank you for your posts. The photographs of your grandson are really lovely.
I was glad to know that you are not suffering from too much fatigue. You still have three more weeks to go so take it easy, relax and enjoy your days.
I was glad to know that you are coping with whatever arises with Herceptin and Perjeta.
I do hope that you will not suffer from the hand and foot syndrome that Xeloda can cause. I know that it seems to be a common side effect of the taxane drugs. I am nearly twelve years out since diagnosis and still suffer from peripheral neuropathy in the feet. It is not painful but just an irritating numbness that I can ignore a lot of the time. As for the hands, I just get a deep redness in the palms from time to time. It seems to happen when I feel hot and stressed. I sometimes just put the hands under cold water. Will you do anything to try to prevent this syndrome with the oral Xeloda?
Sending you fondest thoughts.
Sylvia xxxx
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Hi, Sylvia,
I did indeed enjoy your pics of your grounds with the beautiful flowering plants everywhere. Keeping an eye on them must keep you very busy along with all your other duties. Do you have to do some of the physical work on them too? I am thinking that most of the plants are perennials, or are some of them annuals?
My DIL has 2 children, her daughter is starting college in the fall and her son is starting high school in the fall.
Everyone will be waiting and holding their breath for the results of your election; over here we have the big (nonsensical) drama of the James Comey hearing starting today, he is the former director of the FBI and was fired by Trump. He has already stated that there is no there, there. He is (the media hopes) supposed to give dramatic testimony today incriminating Trump in some kind of election shenanigans with Russia. It's a bunch of hogwash and a waste of time, effort and money. Everyone would be better served by working on this problem of fanatical terrorists that seem to be coming after everyone that doesn't hold to their crazy views.
I read about the hemp/cannabis oil, it is confusing. I think it probably does have benefits, I know a couple of elderly people here with severe arthritis pain, who were given the oil by their children and got a good result from it. But it is confusing on how to buy it, how do you know what you are getting? They could be selling olive oil, it would be hard to know the difference.
The article you posted from Woollams' post is informative, I think many of us already take in most of these nutrients. I am going to have to check on the INDOLE 3 CARBINOLE/DIM, not sure what that is. I have tried and tried to like kale, it doesn't taste very good to me, but I do eat it sometimes.
His article on fasting was interesting, I will have to read it over again. At one point he is talking about cachexia, which is the weight loss due to illness (from the chemo, in my case.) I had that, and was always being encouraged to eat, but food tasted so bad a lot of the time and I had no appetite. It would have been very difficult to eat all the things encouraged, and then to go on a self-imposed fast after that seems like it would have been extreme! For me anyway, since I became very thin during chemo. My MO told me that many women gain weight during BC chemo treatment, that seemed very odd to me.
I must close for now,
Will talk again soon, Love, Mary
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Hi Silvia, how are you, thank you for not forgetting me and keeping my attention on this forum.Today I finished the 12 sessions of taxol, I think I did not do well with them, headache, discouragement, low defenses and anemia. They kept me many days in bed for many days, not wanting to go out, to hear anything, to watch TV or to approach the computer.
The days of chemotherapy, gives me insomnia as manic episodes, makes me want to eat a lot of chocolates, and cakes, and breads with chocolate. I do it on Fridays in those episodes I have done 80 hours of training on the page of the virtual campus ops / oms to raise my salary, I complete 6 months in treatment and 8 months without going to work, so I would not be suspended Of the work I went three days to work, but I catch a flu, and that I use the masks. The flu has diminished I have more voice, I have been 8 weeks so, very crazy, now the cough is not removed I was sent to the pulmonologist who sent me a spirometry test, and continue with the inhalers, and with antiasthmatics and antiallergic and consulted A gastroenterologist because it could be cough by reflux, so taking medications for gastritis as well-
The surgeon says I'm operating on 28 if I do not have a cough and if I have the defenses and the kidneys okay. That I have to take these tests two days before and that he has to see me so he does not have any other coughs. Says that I will do a quadrantectomy and remove the sentinel ganglion that although it did not come positive in the aspiraaracion that made him always feel great. Now the tumor is hardly palpable which gives me much hope. The doctor says that's why I put the marker- the clip in December, to see if there was the marker-
Today I also took the picc, which had been irritating from the sides the skin was turning very red.
I did not like to see my chemo partners thin and gray, I instead went up more than 10 kilos that I have to start losing weight, I hope this chemotherapy will not get me hard and I can start moving tomorrow or Monday at the latest.
I am incapacitated for another 30 days by the oncology that gives me chemotherapy and I do not know how many days the surgeon incapacitates me and that he comes after. I definitely do not want to go back to work for now, the days I went to work did not feel very welcome, everyone greeted me but then focused on their own jobs and the administrative problems they have with my disabilities and my replacement
Another day I was so angry with everyone that if I die I do not want anyone who has not visited me to come to my funeral and I do not want to be taken to a funeral home in a coffin and people see me and cry for me . If they do not give me the things in life that do not give them to me in the death.
So I have felt with many lows less active less active in the subjects that usually interest me, in the first taxol I was very active I went to speak with my teachers of mastery that wanted to return, but then with the headaches, the flu And cough, I did not return to write or read anything about it-
I think I have been very depressed with this of not being interested in anything or wanting to get out of bed does not give me strength or to go to the room.
Hire an employee who comes half a day for breakfast and lunch, and goes away, it costs me a lot, but I think it's the best, my brother is already crazy taking care of me, I've motivated him to study and enter the university despite Of his 55 years so he is doing a course for the national exam they do when young people leave high school and thus is distracted, and I am not their only subject and space.
Economically with the trip to university and I have the opportunity of 120 or 160 days without worrying about being sent to jubilation, thank God I found someone who gave me a good advice on that.
Now I wanted to tell you how I feel that reflux does not let me sleep and the cough even though it has improved, I trust I get better before surgery and can do it,
I have written all this in Spanish and I have used google translator to express I do not want to give me the task of writing in English and it costs me a lot of work, I hope I'm sorry for that,
All in the UK receive my condolences for the violent acts they have had in their territory, and I hope that their relatives and friends are not among the victims.
A supportive and supportive embrace.
I now send you my new photo with hair
Marias
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Hello Silvie again, the test My risk, is all negative, so is a really good news for me.
Marias
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Hello Mary,
Thank you for your post of June 8th.
I was glad to know that you enjoyed the photographs of the flowers in the grounds of our apartment complex. The grounds do indeed keep me very busy and I have been doing this for over fifteen years ever since Raymond and I moved to Exmouth, Devon, on January 10th 2002. We do have gardeners who come here to mow the grass and do work on the shrubs with their cutters etc. I write to them every two weeks with a detailed list of what they need to do on that particular visit and I do a lot of work in between their visits. The main duties of the two volunteer directors is supposed to be administrative but I do lots of other things to keep everything nice. I liaise with our managing agent, but the directors are in charge of all decisions.
Most of the plants here are flowering evergreen shrubs that flower at different times. I have also added summer annuals, mainly begonias and geraniums. I do quite a lot of hard gardening work and enjoy it because I think it keeps me fit and I find it makes me feel peaceful. I have been doing a lot of gardening work for over forty years and hope to continue.
I was interested to know that your daughter-in-law has two children, one starting college and one starting high school. I do hope all goes well with her treatment.
Thank goodness that our General Election is over but it all seems a big fuss over nothing. We seem to be back where we started. The Conservatives won the election but lots of people voted against Theresa May and she now has a minority government and I think it will not be long before her party gets rid of her. She ran a very bad campaign. In order to survive she is having to get into bed with the DUP party, one of the four parties in Northern Ireland and not a very progressive party. Northern Ireland politics takes some understanding. Really it should be part of Ireland not the UK. Watch this space! The Labour party did very well under Jeremy Corbyn, gained a lot of votes but could not win the election. I am now waiting for discussions to begin on June 19th about Brexit, leaving the EU. I think it is all going to get watered down and the people will not get what they voted for in the referendum. I am not convinced Brexit will go through.
I have been following the nonsensical drama of the James Comey hearing. I cannot believe that people can believe all this nonsense about Russian interference in the American election. People cast their votes and that is what got Donald Trump into power.
As you say, the powers that be would be better off spending their time trying to solve the problems of terrorism. I cannot believe what is going on in the UK. We are not safe to walk in the streets any more.
With reference to the Indole 3 Carbinol/Dim (I3C), this is easy to get if you just eat regular amounts of broccoli and kale. I think we all know that as far as cancer is concerned, we need to eat all kinds of vegetables that belong to the cabbage family. I think that DIM is a powerful ingredient of I3C. I always prefer to eat the food rather than take a supplement. I get very suspicious of any company pushing pills. As for the rest of the food mentioned in the pages about seven natural bioactive compounds shown on research to positively affect triple negative breast cancer, I think they are easy to obtain through healthy eating.
I do not know what to think about fasting. I think really we all just need to eat a varied diet and eat in moderation. I think we all re differently to treatment and we all start at different points of health. My weight remained stable throughout my treatment. If patients take a lot of steroids they tend to put on weight, especially if they take them long term. Steroids also cause diabetes and that is probably connected to the fact that they make you put on weight. Tamoxifen also makes you put on weight. I am not sure whether the aromatase inhibitors also make you put on weight, but it would not surprise me if they do. They certainly cause osteoporosis. Some patients will loose weight during treatment because they are eating less through lack of appetite. My understanding of cachexia is that it is a condition where cancer is eating away at you and so is uncontrollable weight loss.
That is about all for now. I have just noticed that Marias has posted. There is still no sign of Hanieh.
Love.
Sylvia xxxx
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Hello Marias,
It was a nice surprise to see you back on the thread. We have not forgotten you and I have been wondering what has been going on with you. I can certainly see that you have been having a really bad time with lots of ups and downs. I need to read your posts more carefully so I shall post later on today when I can answer in a more relaxed way.
Some of the Google translation sounds strange.
If you want, you could PM me your Spanish version and then I can read it side by side with the English so that I have a clear idea of what you are expressing in your own language.
Thank you for your kind words of sympathy about the terror attacks here in the UK. I cannot believe what is happening to this country.
Fond thoughts.
Sylvia xxxx
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Hello again, Marias,
First of all congratulations on having finished twelve session of Taxol. That is a great achievement. Of course you had some side effects, but you have got through them all. I think most people have some side effects, to a greater or lesser extent. It was good that you were kept in bed while you had some bad side effects, because there is nothing as good as resting and sleeping to strengthen your immune system. It was good for you to switch off all the everyday intrusions and just rest.
While you were going through chemotherapy, were you taking a lot of steroids to prevent some side effects? Usually, here, they are taken for just two or three days after chemotherapy infusion. If you take them for a long time you do get insomnia and you do put on weight. I was interested that you said that you got insomnia during chemotherapy and that it made you manic. Do you mean that it made you very energetic and that you had to be active? I know that steroids do this as well. I have a female cousin who was taking them for a long time to help with emphysema and asthma. I know from her that she put on lots of weight, pads of fat on her upper back and that they increased her appetite. She stopped taking them and she is now back to normal.
Now that you have finished chemotherapy I hope will try to lose the weight you have put on and that you will be able to resist chocolate, bread and cakes. These are very bad for cancer patients anyway. Try to cut down gradually.
I am reading your post line by line and I have now got to some lines that read not quite right to me.
I think you are saying that on Fridays you did 80 hours of training on some online course to help you get a better salary in your work.
I think you are also trying to say that you completed six months of treatment and did not go to work for eight months. I think you were doing the online training in order not to lose your job. If I have not understood clearly what you are saying, please let me know.
I have understood that when you did go to work you caught the flu and had to wear a mask. The consultants do tell all newly diagnosed patients that, when they are going through chemotherapy etc., they have a compromised immune system and can pick up infections very easily. I was told to avoid all crowded places and to avoid any people, friends or family, that had an infection. Before I started treatment I had to go and have a flu injection and a pneumonia injection. I did avoid crowded places. I was also told that during treatment I would not be able to have any dental work done, so I had to get a good check up before I started cancer treatment and make sure my teeth were all in good order.
Give yourself time to recover completely from the flu. Having a cough is always the last thing to disappear after flu. A cough can last a long time. Take plenty of vitamin C and drink plenty of fluids. Lemon and ginger tea is very good. Fresh grated ginger, squeezed fresh lemon in hot water with a little honey will give you a lot of relief.
I do hope the inhalers and medication against asthma and allergies will help you a lot.
That is all for the moment. I shall continue going through your post line by line. I shall keep the English as simple as possible, so that it will be easier for you to understand.
Wishing you all the very best. Keep looking forward.
Sylvia xxxx
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Hello sylvie, yes I did to the courses in line in the ops/oms page https://www.campusvirtualsp.org/ during the fridays day when I took my quimio.
I have to do 80 hours to get better salary in my job.
Yes the corticoid made me no sleep and get activity for two days. and then I get so tired than I did not go out of bed. for example yesterday I only sleep two hours.
Since November I dont go to work, I only go three days in May to dont lost my job. Here in Colombia you go to jubilation plan after 180 days on medical disability. so I stop the incapacity, I began a new Day count.
I hope you get more clear about my letter now.
Have a nice day.
Marias
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Hello again, Marias,
From your post it looks as though you will be having surgery on June 28th if everything is alright. I hope your cough has gone by then and that everything else is fine to give you the go ahead. I think that with the long chemotherapy journey behind you everything should seem easier. Remember that it takes a long time to recover from chemotherapy, so do not expect to bounce back quickly.
It looks as though the chemotherapy has worked well for you and it is good news that the tumour is now hardly palpable. It is a good thing that the sentinel node did not come back positive. It is usual procedure here often to take out a few nodes with surgery just to make sure.
The redness has probably come from the chemotherapy treatment. I had red blushing of the face during chemotherapy and with the taxane drugs like Taxol one of the long lasting side effects is what we call hand and feet syndrome. This is hands and/or feet going red. You can also get neuropathy in the hands and feet, which is also long lasting and often permanent. It is something that we can all live with.
I have already said in the other posts about losing weight gradually.
Just take each day at a time. Concentrate on getting through your cancer journey and do not worry about anything else.
When we are given a cancer diagnosis and go through all the ups and downs of treatment, our emotions can be all over the place. We can be subject to mood swings since our hormones are all over the place. People should understand this. If you feel you want to let off steam then come and do it here. We understand all this. If you want to and you feel it will help, join a group or go for individual counselling. Do not keep all your emotions inside of you. A serious illness can soon sort out your real friends from the fair-weather ones. The same goes for family members.
As I have said before, take one day at a time and do what you feel like doing and try not to worry about things you do not feel like doing.
I think I have covered all the points in your post. I shall sign off for now and wish you all the best.
Thank you for the link. I have looked at it and it all seems very interesting.
Take care of yourself while you are waiting for your surgery on June 28th. Keep in touch and let us know how you are doing.
Sending you best wishes on behalf of everyone on the thread.
Sylvia xxxx
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Hi, Sylvia
I think it is a good thing you are doing so much for your apartment complex, you have too much talent and energy to sit on the sidelines. I'm sure everyone appreciates it!
I finally got some annuals and planted some pots for my patio, I am behind because of the trip to Europe. I didn't want to plant a lot before I left because it would just need to be watered, now is a good time to shop for plants because of lower price, but not-so-good because the plants are getting root-bound, one has to be careful. I will post a pic if I can get a good one.
I am puzzled by your Election. It looks like nobody won, but Jeremy Corbyn is acting like he won and Theresa May is acting like she lost. I guess because she called the election and she didn't do all that well? I read that she has lost the parliamentary majority, thus has lost authority. And Jeremy Corbyn is anti-Brexit and pro-open borders, so I don't know why he did well if everyone is wanting their borders more secure, and the majority of people wanted Brexit. Can you explain? Jeremy Corbyn might be a nice man, but he doesn't seem like the right man for the current situation.
I think you are right about cachexia, weight loss due to illness. My weight loss was due to lack of appetite, caused by chemo. An interesting note, a few months after chemo finished, I was eating again but still not gaining weight. My acupuncture doc told me I wasn't absorbing my nutrients, so he would put in needles for that problem. It did turn around a few weeks later, and I started seeing improvement.
I am also going to answer Maria's post, she has certainly been through a lot!
I'm glad the Indole 3 is easy to get from food, won't have to bother about that. I do eat a lot of vegetables.
I will talk to you soon! Love,
Mary
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Hello Everyone,
I had a great time at the survivor celebration. I met a friend there that I first met at the Look Good Feel Better makeup workshop last year. We listened to stories from other survivors from our facility, and marveled at how far we've come since we last attended the event. Last year I went on the day before my first chemo treatment, and she was a month into hers. I also got to meet my wonderful peer mentor in person. Someone once told me that this thing is a sisterhood, and I've really found that to be true.
I hope I don't upset anyone with this. I don't know how I would feel about my discussion with my oncologist if I was facing troubling results or a recurrence. As far as I know, things are OK for me right now, so it was easier to hear what he told me. He said that we shouldn't focus on the somewhat atypical recurrences and cancer news around us. I certainly realize how hard that is, but he said that it's still a choice. He also said that we are probably too attached to this existence, and that maybe that's only because we don't know any better. He's religious and I'm not, but he said that until we each make some kind of peace with the idea of death - not giving up, but accepting what it means - that nothing will really keep anxiety at bay for long. Somehow that advice really resonated with me, and so I have some work to do to there. It's interesting to me that many of the nurses and doctors in my treatment facility are religious.
I received free, custom knitted breast forms this week. They arrived with a hand-written note, and I was really touched. These are great for post-mastectomy or lumpectomy patients, if anyone is interested: http://awesomebreastforms.org/. It's great to be able to "pre-load" my comfortable bras for work.
Sylvia, I agree that we can become slaves to our possessions. My post-recovery plans include relentless de-cluttering. It's so easy to overfill our houses. And Simon and Garfunkel are a long ago favorite of mine. Music can be very therapeutic.
Mary, thanks for the travel pictures, and Sylvia, for the garden pictures.
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Hello Again,
I finally finished the Gloria Swanson autobiography, which is over 500 pages long. She married 6 times, which was one of the only things I didn't admire about her. One thing that stands out the most is that she was a very early advocate of clean eating. Her final husband was William Duffy, (also the ghost-writer of her book), who wrote "Sugar Blues," in 1975, advocating a macrobiotic diet. She was quite a character, who believed that a host of serious health problems could be cured by diet. She was vibrant and stunning into her 80's. It would take me hours to summarize the book, but If anyone is interested, this is a short, decent synopsis, along with some beautiful pictures.
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Hi, Marias
I am so sorry to hear you have had a hard time with the Taxol chemotherapy treatments. It sounds as though your immune system did get very low, and you came down with the flu. It hit you hard because your body system was so low. It will get better, but it will take some time. As Sylvia said, you need to get on a good eating plan of foods that are good for you, such as vegetables and fruits, and proteins like fish and beans. If you can't tolerate too much yet, there are also good protein products. I have one called "Bone Broth Protein Pure". I take it sometimes when I feel I haven't gotten enough protein in a day. It is non-dairy, and has no sugar, no gluten, no grain. It has not much taste, I mix it with some almond milk. The sugary foods you are eating are not doing you any good.
I see you are having surgery soon, I hope that all goes well and you can begin to recover. You are very strong-minded since you have continued studying while feeling so bad, I admire that very much. I hope you have things planned so you can live comfortably while getting better.
I am glad your hair is coming back, it helps to feel ourselves coming back to normal.
I am glad also you came back here to let us know how you are!
Talk to you again soon,
Mary
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Hi Sylvia,
I had a really interesting conversation with my radiation oncologist today.He is amazing! I asked about proton radiation and he said it really isn't a new therapy but it has specific applications.It is good for unique tumors and children with tumors.Hensiad he was upset when someone form MD Anderson made it sound like it was a new technology and that the machine costs 250 million dollars and that takes a lot of therapy sessions to pay for it.I like the fact that gen started out as a radiation technician and then became a doctor.He is honest and i do rust what he says.I guess we all aren't aware of
THe money making aspects of therapy.Things are going
Well and it is getting hot in upstate New York.Two more weeks of radiation and my skin is holding up.
Love,
Rhonda
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Hello Mary,
Thank you for your recent post and for your kind words.
I am sure you will have a colourful display with your flowers in their pots on the patio. I shall look forward to some photographs.
I am not surprised that you are puzzled by our General Election. I say only in this strange country of mine can we end up with these absurd situations. Remember, this is a country that cannot decide on one name for itself. We are Great Britain, the United Kingdom, the British Isles and even just England.
In the General Election the Conservatives won but Theresa May lost them their small majority and they now are a minority government. They could govern as such but could collapse any time. Because of this, they are busy trying to form a majority by making some kind of deal with one of the very ultra conservative parties in Northern Ireland, known as the DUP, the Democratic Unionist Party. There is a lot of trouble over this, because of the way the Northern Ireland government is run. I shall not go into this as it is rather complicated. There are four parties in Northern Ireland. One of the these is Sinn Fein, which is on the left and they believe in a united Ireland, and so do I. They have seven MPs elected to Westminster, but they refuse to sit in the House of Commons and will not swear allegiance to the Queen, so their seven seats cannot be counted to help make up a minority government. The DUP has just ten seats in Westminster and they are going to use these to keep the Tory Government in power. Do you see what I mean, Mary, by how absurd we are. Northern Ireland should be part of the Irish Republic and for this country to have it is just a remnant of Imperialism and Colonialism. The DUP is Protestant and Sinn Fein is Catholic. At the moment everything is peaceful after the peace agreement but with all this going on this could be broken. I do not think Theresa May should have involved the DUP in all of this.
I think she should have stepped down. We would then have a new leadership contest in the Conservative party and probably another General Election.
As for Jeremy Corbyn, he has worked wonders for the Labour Party and especially considering the abuse that has been hurled at him. He is a decent man and believes in representing the many and not the few. I voted Labour in the election, in fact the person running in my constituency, a woman I know well, got my vote.
We are now in complications with Brexit. It all kicks off on Monday, but the Conservatives are busy trying to change it all and I fear that we shall not get what we voted for in the referendum.
I hope this helps to 'unpuzzle' everything for you.
By the way, Jeremy Corbyn is not anti-Brexit. He does realise that we need to control our borders. Apart from anything else, we need to keep our population under control. We are overpopulated for our size and it is affecting our health system, education system, housing and especially our identity.
I must sign off now, as I have some things to do, but I will post later.
Love.
Sylvia xxxx
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Hello again Mary,
I agree with you about cachexia and that your weight loss was due to lack of appetite. As for putting on weight, I think patients with hormonal breast cancer put on weight due to tamoxifen and I think some patients are put on this first of all before standard treatment. Steroids definitely make you pack on weight but I thought patients were on them only for two or three days after chemotherapy. I was strongly against any steroids and I wrote a letter to this effect. On my consent form for treatment I remember signing that I did not want long term steroids and that I would not take them. I think that it is not good to take steroids given that cause diabetes and this weight increase, not to mention fat pads on the body. All these are the last things that cancer patients need to develop.
Marias has certainly been through a lot and she does need our support.
I am still listening to LBC and the Nigel Farage programme. I think he was wrong to tell UKIP supporters to vote tactically in the General Election and vote Conservative to give Theresa May a strong position when dealing with Brexit with the EU brigade. As a consequence, the UKIP vote was virtually wiped out and was only 4% of the total votes in the General Election.
I am also following the Legislative elections in France. I do not like Emmanuel Macron, the new President. Again, he was elected by default. It will be interesting to see what happens in the second round on Sunday. In the first round there was a 52% abstention rate.
I think in the UK and France we need to go to proportional representation.
As for Donald Trump, I think he has to be given credit for trying to do what he promised his supporters he would do. However, once the Establishment gets its teeth into people they are like a dog with a bone. The Alice in Wonderland saga continues and it is laughable.
Another victim of the nasties is Julian Assange.
Do you ever watch the Lee Camp show? He says it how it is but I do wonder how he gets away with it. I also like to watch Sputnik, Crosstalk Rules, Going Underground. You get some intelligent people on these programmes.
That is all for now. I have had another busy morning and I want to finish my posts if possible and then do some watering in the grounds. We badly need rain.
Thinking of you and hope to hear from you soon.
Love.
Sylvia xxxx
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Hello Pam,
I was glad to know that you had a great time at the survivor celebration. It sounds really therapeutic to be part of a sisterhood. I feel American women do this better than the Brits.
As for how we would all feel if we had recurrence, local or spread to another part of the body, I think we would make decisions at that moment. I think it is best to be positive about this and to concentrate on the fact that so far there is no recurrence or spread. I am coming close to twelve years since diagnosis, but I still think, from time to time, about the what ifs. Most of the time I keep positive, live normally, and concentrate on that.
Like you, I am not religious. I believe this is the only life we get and we had better make the most of it. I do not believe in an afterlife and I object to the church telling people to suffer now because it will be better in the next world.
Thank you for the link about breast forms. I am sure it will help a lot of people.
I am a proud minimalist and think living clutter free is very therapeutic. You cannot take it with you when you go and it is selfish to leave your clutter for someone else to dispose of.
I do hope you will find de-cluttering therapeutic.
That is about all for now. Take care, be happy and be positive.
Love.
Sylvia xxxx
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Hello again Pam,
Congratulations on finishing the Gloria Swanson autobiography, especially as it was 500 pages long. With six marriages I would think she had a lot to say.
I agree with her about clean eating and that a lot of our serious health problems are caused by bad eating and can be helped a lot with clean proper healthy eating. I am going to have a look at the video you have posted when I get a bit more time later on today.
Thank you for your contribution to the thread.
Love.
Sylvia xxxx
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Hello Rhonda,
Thank you for your post.
It sounds as though you had a most interesting conversation with your radiation oncologist.
I was most interested to know that he said that proton beam radiation is not really a new therapy but that it has specific applications. I have read that it is good for treating brain tumours and that it is effective for children. That explains to me why a couple took their child on the run as it were to get proton beam therapy treatment in one of the Eastern European countries because it was not available here. I thought at the time that the hospital here was out of order telling them not to go abroad and even alerting the police. It all ended well and I believe the child is fine now. However, there is another case where a couple want to take their child to the US for treatment of some kind or other, that is not available here. It has gone to court so I do not know what the outcome will be.
As I have said before, we do not have proton beam therapy here but two complexes are being built but they are not yet ready.
I think I remember reading recently that proton beam therapy was effective for prostate cancer.
I think we should all be aware of the cost of all of our treatment. During chemotherapy I had very friendly and good conversations with the nurses looking after me. I did ask them how much my chemotherapy was costing the NHS and they were surprised that I wanted to know. I think I must be one of those adults who has continued with the never-ending 'whys' that we get from two-year old children! I cannot stop questioning everything. Years ago I looked after the little boy of friends of mine and we would have lovely conversations where his sentences would begin with 'Sylvia, why....?'.
I agree with you that people who work their way through a work system are usually very effective because they have gone through different stages. That is why I am so in favour of apprenticeships and learning on the job.
You are nearly through with radiation so keep looking forward.
I am always interested in the fact that the American ladies talk about their MO and their RO. I had just one oncologist who dealt with everything, chemotherapy and radiotherapy.
That is about all for now. Take care.
Love.
Sylvia xxxx
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Hey Pam,
Glad you enjoyed your survivor celebration, are you referring to one of the "Relay for Life" events? We have our local one coming up this weekend. I will probably not attend as it is held outside and it is going to be very hot and humid. I just don't handle that kind of weather very well. I had heat stroke a long time ago and since then have to be careful in the heat. The support you experienced in your group sounds wonderful, glad you have that; it's such a help while going through this.
It sounds to me as though your doctor is a philosophical doc with some good advice; although sometimes I just want to hear "Everything's going to be fine!" One of the lessons I am trying to master is acceptance. The lesson that after I have done all I can do in a situation, inner peace comes from accepting the results. When we go through something such as all of us here have done, we look our mortality in the face, maybe for the first time. I also battle worry and doubt, but it is so time-consuming and energy sapping.
I don't think most religions want you to suffer in this life, but they do try to teach how to handle suffering, since it is inevitable in all our lives.
Gloria Swanson sounds like she had a very interesting life, the very frequent marriages must mean she was an eternal optimist, sort of like Liz Taylor. I think Liz was married 7 times! I will keep that book on my list of books to watch out for, I like interesting biographies. One of my favorites is "The Last Empress", about Tsarina Alexandria Romanov, the wife of the last Tsar of Russia, Nicholas II. It is out on loan at the moment, I wait for my favorite books to come back like wayward children!
Are the knitted braforms just for surgery recovery, or for anyone who needs a form? It sounds like they are very comfortable.
My DIL had her BMX with reconstruction surgery yesterday, all went well and she will be home today.
Talk to you soon, Love,
Mary
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